Based on the results of the survey above, DSRF and a number of partner organizations are developing a Down Syndrome Medical Care mobile application, with three primary areas of focus: recording daytime and nighttime behaviours, tracking medications, supplements and nutrition, and integrating reminder and feedback notifications.

We would like to thank the Down Syndrome Research Foundation for their help in distributing the survey through their networks, the pilot study families who took the time to complete the survey and the individuals who reviewed the survey prior to its distribution.

Funding and grant-awarding bodies:

This work was supported by the Rare Disease Foundation Microgrant Program under Grant #2013-34

Extended Abstract:

There is lack of evidence in Canada surrounding the costs to parents and society to raise a child with intellectual disability. Knowledge of these costs is necessary to ensure appropriate governmental support to families and to assess the financial impact of new diagnostic tests and treatments. This is the first instrument developed to capture such costs in Canada.

We adapted two paper-based cost diaries into an online retrospective survey and evaluated it using a small pilot study of individuals with Down syndrome. Survey responses were analysed and costs appeared concordant with those reported in other countries. The survey documented care time required, impact on employment, and other expenses. Parents completed the survey with apparent ease, giving answers requiring little clarification; they used comment fields to add data that elaborated on both financial and emotional costs. Minor modifications were made as a result of this pilot, and the survey is now available for wider use.

In total, 8 participants from across the province of British Columbia completed the adult version of the survey and 29 completed the child version. These were 11 pre-school children and 18 school age children. The adult surveys were analyzed for usability and the child surveys were analyzed for costs.

There is large variance in overall costs among families. Median values for yearly total parental costs for pre-school and school age children costs are $35,409 and $43,349 respectively. The largest two contributors to these costs were income loss through parents quitting jobs, and from caregiving time required. The weekly caregiving time averaged 31 hours. As typically developing children enter the school system, many previously unemployed or under-employed parents are once again able to return to work. This does not appear to be the case in our small sample of parents with Down syndrome. From our limited discussion with these parents, this may reflect the continuing need for care in older children. Some participants stated that holding a job would be impossible given the irregularity of their child’s needs; finding a job with the needed amount of flexibility is difficult. The survey was able to capture these data and to provide some explanation for this finding:

Median societal costs for pre-school and school age children are $8,559 and $39,133 respectively. The higher cost for school aged children reflects the educational supplement paid to schools, which is the largest contributor to societal costs. Other examples of societal costs include government benefits paid directly to parents, respite care for older children, and transportation costs to medical appointments.

Costing surveys such as this cannot calculate the value of the psychosocial impacts of raising a child with a disability. Whereas the survey documented parents’ total hours spent caregiving, the emotional and energetic toll of caring for a child with extra care needs not only costs parents, but siblings and extended family as well.

Feature Video

From The Blog

By Glen Hoos
You knew this wasn't going to be a typical night at the theatre when the lead actor interrupted his lines to give a shout out his mom from the smoky stage, and she enthusiastically called back in response from the audience.
Indeed, there’s nothing typical at all about King Arthur's Night, a radically inclusive play in which generous ad-libbing and spontaneous improvisation are par for the course – and key to its substantial charm. The (very!) creative adaptation of the King Arthur legend, which had its Vancouver debut Wednesday evening as part of the PuSh Festival, is the product of a collaboration between Vancouver's NeWorld Theatre and the Down Syndrome Research Foundation, and springs from the fertile imagination of writer and star Niall McNeil and his co-creator Marcus Youssef.
McNeil, who has Down syndrome, first worked with Youssef on Peter Panties, an adaptation of Peter Pan which was presented at the 2011 PuSh Festival. In the audience was then-DSRF Executive Director Dawn McKenna, who expressed a desire to partner together in the future.
"Niall and I were commissioned by Luminato to write a King Arthur adaptation," recalls Youssef – a project that would ultimately be five years in the making, fueled by McNeil's extensive research into the legend. "Our Director Jamie Long, our Musical Director Veda Hille, and Niall and I started teaching classes at the Down Syndrome Research Foundation, which is where we met Tiffany King (Guinevere), Andrew Gordon (The Saxon) and Matthew Tom-Wing (Magwitch). We all agreed they were the three we all wanted to be in our show."
The DSRF students joined Niall in integrating seamlessly with the professional cast, which is bolstered on stage by a live band and 20-person choir. Together, they deliver a delightfully offbeat rendition of the Arthur tale featuring nods to local fixtures like Harrison Hot Springs, modern twists like the iPad that a lovestruck Lancelot gifts to Guinevere, and a fearsome goat army that… well, you just have to see it to get it.
The play opened to a rapturous response from the standing room only crowd at UBC's Frederic Wood theatre, the first of five almost-sold-out performances. The cast was clearly thrilled. "We love it so much; it's so much fun!" gushes leading lady King.
To Youssef and his colleagues, King Arthur's Night is so much more than just another play. In fact, he gets choked up as he reflects on what this project means to him.
"I have learned more than I can say. Beginning with my collaboration with Niall on Peter Panties and then extending it to this bigger collaboration with these guys… honestly, it makes me a bit emotional to talk about it. It's been the deepest learning experience I've ever had. There is a very big difference between what we thought they would capable of when we started and what they are now doing in the show, which is not only a whole bunch of cool acting stuff, but also some really beautiful, present performance that all the professionals in the ensemble are learning tons from. I just would have said, 'There's no way.' My perspective of what it means to be a person in the world has radically changed."
If McNeil has his way, King Arthur's Night is just the beginning. Later this spring, he's off to the Stratford Festival in Ontario, where he'll sit in on rehearsals of The Tempest at the invitation of the festival's Artistic Director, Anthony Cimolino. He's also currently working on two new adaptations: Beauty and the Beast, and Buffy the Vampire Slayer.
"Marcus isn’t able to do these with me, but there are other playwrites who can help me too," McNeil affirms confidently.
True enough, Youssef admits. "Niall’s working on a bunch of stuff; I of course can’t be involved in every single thing he does." But that doesn’t mean he’s finished with inclusive art projects, or working alongside a partner with whom he shares a special, brotherly chemistry on stage.
"We're very hopeful that in the fall we'll be able to start a once-a-week collaboratory ensemble including these guys, our professional actors, and maybe some new folks too, where we just make up new stuff, and maybe a show will come out of that," he says. And there may yet be more to come for King Arthur's Night, too: "Nothing's confirmed yet, but I'm optimistic there will be more presentations of this show in other places around North America."
That's good news for the stars of the show, who are in no way ready to give up the spotlight. Asked whether he wants to continue acting, Gordon doesn't hesitate. "All the time! It's always super cool."
King Arthur's Night will be performed daily through Feb. 4 as part of the PuSh Festival. Click here for tickets.